Iqbal, S; Moniz, S; Bennin, F; Garavito, GA; de Koning, R; Yu, R; Vindrola-Padros, C; (2025) Exploring the implementation of a data trust committee: a qualitative evaluation of processes and practices. Research Involvement and Engagement , 11 (1) , Article 19. 10.1186/s40900-025-00693-4.

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Abstract

BACKGROUND: There’s a significant demand to link and analyse administrative and routine local hospital data for health research to improve treatments and understand disease and diagnosis. Involving patients and members of the public in how data are accessed for service improvement is crucial for developing an acceptable, ethical and information governance-compliant whole system data linkage. A key challenge is ensuring sustainable and genuine public engagement that fosters trust in data use. This study evaluates the early implementation of a Data Trust Committee (DTC) at a London hospital, assessing its impact on research efficiency and the experiences of key stakeholders, including patients, staff and researchers. METHODS: A rapid qualitative evaluation was conducted using semi-structured to assess the implementation and perceived impact of the DTC. Purposive sampling targeted DTC members (n = 8), attendees (n = 3), and researchers (n = 2). Thematic analysis, supported by RREAL sheets, identified key themes in stakeholders’ experiences and perceptions. RESULTS: Findings highlighted five key areas: (1) the programme theory, outlining the DTC’s role in data governance and responsible data access; (2) varying stakeholder perceptions of the DTC’s purpose and decision-making processes; (3) The DTC’s impact on research oversight, data access and approval processes; (4) challenges related to role clarification and communication; (5) the perceived effectiveness of the DTC in enhancing data quality, research oversight and approval speed. While participants recognised the DTC’s potential to enhance data quality and prioritising patient experiences, challenges related to the speed of applications, communication gaps, and technology barriers were identified. CONCLUSION: The DTC played a pivotal role in reshaping research regulatory processes, and how this may benefit patients. However, balancing ethical risks with patient benefits remains an ongoing challenge. Addressing role clarity, communication strategies, and stakeholder engagement is essential for optimising future DTC implementation. Future research should expand to evaluate DTC models across diverse healthcare settings to enhance data sharing frameworks.

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